This Is Not The Way My Life Was Supposed To Go

I have to admit that MS can be easier to handle, cope, and accept some days, but other days it can feel like the world is caving in on you. That is where I feel I am right now. Not all of it is the MS, some is the economic times but either way I look at it, it still falls back on the MS.

My MS has been extremely active this year. I have not had any recent MRI's to see if it is progressing or more permanent damage done, but my life has been extremely affected because I haven't had too much down time. Down time is kind of a funny way to say it, because what I mean is not many good days. Because of this I am not working, and we are trying to raise a family of 5 on just my husband's income. I know a lot of people are having to do the same thing because of the economy. There is a difference though. Besides the normal bills, car payments, rent/ house payment, groceries,clothes for the kids and their needs,school fees and school related stuff..We also have to pay for loads of medications, shots, more doctors visits (actually a lot) and special needs equiptment.

I realize that jobs are far and few right now, but because of my issues, I feel as though I am not pulling my weight. I did for many years. I find myself saying a lot more now, "THIS IS NOT THE WAY MY LIFE WAS SUPPOSED TO GO". Now if I looked at it from the religous stand point, then yes, apparently this is what God wanted for me. But how can that be? I can't imagine God wanting something bad for me. Which leads me to believe that I am supposed to be learning something from this or maybe a punishment for something in my past that I don't know I did. If I look at it from my stand point, I stick with my view of "This was not the life I was supposed to have". I was active, I took care of the cooking, cleaning, the kids, the bills, the homework, the groceries, the yard and ponds. Not because I had to, but because I loved doing it. I have a wonderful husband that would have done it but I chose to do it all. Along with all of that: I was very active with the community and neighborhood watch captain, active with the schools and PTA, was always worrying and trying to save the world in anyway I could. Some people claim that Multiple Sclerosis is most found in people with Type A personalities. I guess, in my case that is true. I was always told to stop worrying about others so much and worrying about the what if's.... If I didn't have something to worry about, I would borrow other people's worries. My Mom and I used to joke about that all the time.

Now, as I sit here, I wish I would have listened. maybe I wouldn't be in this postion. No matter how hard I have tried, I still can't stop worrying about stuff. I worry more about my family but still spend a lot of time worrying about others. I guess that is just me. I don't think that will ever change. I always have to figure out the WHY???? So, I have come to the conclusion that this diagnosis was not a punishment, it is now something that I have to learn to deal and cope with so I can help other's with MS in some way or another.

I worry about our bills, groceries, utilities and so on, but as funny as it is, you would think we would qualify for assistance somewhere somehow, but we don't. We are always $40.00 - $60.00 over to qualify for any assistance. I have no clue how they figure that out. It is very hard for me to ask for help or even accept help, because I am usually the one always helping others. And when I really do need it we don't qualify. I don't know where this road/journey is going to take us or how we are going to survive it, but deep down I know we will. We have to... Our kids depend on us and I will make it work... As I say this, I laugh because I have no idea how this is going to work but I will figure it out.

I carry a lot of guilt daily for putting my family in this situation. If I wouldn't have gotten this disease, my family would't be suffering the consequenses of it. My kids would have their Mom around more for them, not sleeping because of the severe fatigue. I would be working and being able to pay the bills, hopefully. I would be taking care of all the things I used to.

My Dream:
Since I spend a lot of time laying down, I have nothing to do but think. I think of all the things I wish I could do but most of all, I think about how I can help my fellow MS'ers. I have come to the conclusion that if I had it my way... I would be out helping the Newly diagnosed and their families. I would help them understand, prepare, but encourage them to fight this disease. I would help their families understand MS and help teach them how they can be supportive to their loved one. I would open a donation drive of clothes, food, meds, money and so on to help those families when they hit rough times. So they are not having to chose between Medicines and groceries, or clothes for their children and school supplies vs. utility bill. While doing this I would push for more information about this disease. There are over 200,000 Americans diagnosed with MS and many more each day being diagnosed. The average age used to be between early twenties- mid thirties and majority being women. Boy how that has changed. They are finding yound children even toddlers with it and a lot more men being diagnosed along with older ages. And yet, if you ask people (the public) about MS most don't know much at all. The surprising part is that those same people that don't know much at all will admit that they know of at least one person with it. I agree that money should be going to research for MS. I also believe that the cure is out there and when they find it, that will be a huge breakthrough for hundreds of other Autoimmune Diseases. But until then, countless numbers of lives have been lost (due to complications of MS) and quality of lives affected.

Until then, I will be trying my hardest to achieve MY DREAM along with trying to survive the economy and times. I truly believe fellow MS'ers believe and would agree that this is not the way "our" lives were supposed to go.

LDN Update and CCSVI

As I wrote about awhile ago about Low dose Naltrexone (LDN), I was telling about what I have seen in improvements and no- improvements.

I always have to remind people that when I started LDN, I was looking for huge improvements with the MS and Fibromyalgia. I also was hoping for changes with the Chron's. I have been on LDN now for a little over 3 months. I have found that I am stuck at 3.0mg. When I up the dosage things seem to start declining again. I am shocked that the LDN at this level has helped the Chron's and minor changes have occured with the MS and Fibro. I don't know if I should call them minor, I think I would say that LDN has helped those disease symptoms, just not the symptoms I was thinking they would help with. The changes/ improvements have been enough that I have no intentions of stopping the LDN. I also feel strongly enough to say that I wish I knew about this treatment 4 years ago. I feel that if I would have started with it, I probably would not have the permanent damage that has already taken place. If and when someone newly diagnosed comes to me, I will tell them to look into this treatment.

The hardest part, is that when you are first diagnosed with a disease, you feel like your life is in the hands of the Doctor. You trust that they are doing everything they can to treat you to the best of their ability. I disagree. You have to be your own advocate. You and your doctor must work as a team. Don't ever be afraid to question them or bring new ideas to the table. If you feel that you are not being being listened to or getting answers to the questions you have, then it is time to find a doctor that is right for you. I am in a situation that my insurace tells me where to go. I have the best Neuro at the clinic but we do not see things eye to eye. Not many Doctors/ Neuro's will prescribe LDN at this time. They claim that it is not approved by the FDA so they don't feel it works. Well, maybe they are right for some people but when you have a disease like MS, there isn't many treatment options. My Neuro seems to think the only treatment is Steroids and then medications to treat all the symptoms. My suggestion to my Fellow MS'ers is to research and learn what all there is out there and decide what you feel is right for you. Sometimes doctors will say No and they will have a good reason that will make you change your mind. If not then go with your gut.

CCSVI is the big rave right now. I am learning what I can about it. I had an open discussion with Fellow MS'ers on Facebook the other day. Wow, it is a heated topic and many opinions. I don't really know where I stand on this procedure. I do think that there is proof that it does help some patients. It is too early to tell what the end result is for them. At the moment they are doing great and seeing a huge difference in their lives. A stent and/or angioplasty makes me wonder if they will need to keep repeating this procedure throughout their life. It may be worth it if it gives them a better quality of life. The discussion became very heated, which leads me to believe that there is more studies and research to be done.

What I have gotten out of everything is that this has been a great year in advancements towards finding either a cure or better treatments for us. And that in itself is great news.